Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Sunday, February 19, 2017

Divergent, Gattaca, and limitations "for your own good"

Last night I participated in the #FilmDis chat about human gene editing and GATTACA. Which, even though it's been a while since I saw the film (I think the last time was in 2010), I have opinions about. It's a film about eugenics, and in a very real sense it's about eliminating disability in most people but creating a new genetically inferior (disabled) underclass that looks a lot like the old one, people who couldn't afford to have their kids genetically selected birth this underclass. So do people who leave their children's genes up to luck. (AKA, the protagonists parents, at least the first time.) But the only person we see in the movie (which is largely about disability discrimination) who we'd discriminate against today? He's got an acquired disability. It's not genetic. And he's the one who's genetically valid, selling his genetic identity and thereby allowing the protagonist to get in the door to his dream job.

And Divergent is a series I have opinions about. I loved what looked like neurodivergent representation in the first two books, except for the part where I knew what was coming: the Divergent are secretly neurotypical and everyone who really fits a faction has "genetic damage" making them neurodivergent. And sure, we build a city in the end where no one really believes in genetic purity vs. genetic damage, but all through the series we're shown the functional superiority of Divergent people: Tris, do your Divergent magic, think like the Erudite and tell us what they'll do! Tris, come in first in initiation and have it clearly be about your Divergence. Or ... your neurotypicality.

So it's probably not shocking that I want to connect them? They've both got genetic engineering and discrimination based on genetic makeup. And I do:

You see, the entire idea of factions in Divergent is about behaviorally conditioning people to behave in ways that takes their presumed "damage" to an extreme, in a way that's hopefully useful. This ... actually reminds me of Specialisterne? More on that later, maybe. They think it's the kindest thing to do, giving people a way to be useful while using their supposed strengths (that are secretly still defects.) It's still limiting people based on an idea of what their potential is, for what is supposed to be their own good.

And several times in Gattaca, we see Anton attempt to dissuade Vincent from his goals, in the name of "protecting" his "invalid" older brother. He should take the jobs that "invalids" can get, not try to go to space as he's always wanted. He should leave the company he works for. He should accept that his genetics really do make him inferior and work from there, for his own good (for his own safety.) And maybe it would be safer. (Isn't it usually safer, at least in some ways, to stick to the paths laid out for you as acceptable?) But this sort of limiting people for their own "good" and to keep them "safe" exists in the real world, for disabled people. And guess what? It's not actually safe!

So in both Divergent and Gattaca, we have people limiting others (or trying to) in the name of their own good. Adults who only want the best for us, hurting us because of what they do not know. (My fear is not of water, and now I remember Vincent and Anton competing in the water. He didn't save anything to get back.)

Wednesday, February 15, 2017

Alyssa Reads Memory Blunting: Ethical Analysis -- Divergent Thoughts

I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. This part is just the connections I've drawn to Allegiant. More later.

The council starts by asking when we would want to reduce the emotional impact of an experience, and why we should/shouldn't in a given situation. Definitely good questions to consider.

These questions remind me of the ending of Allegiant. We have the protagonists wiping the memories of everyone at a government agency in what boils down to self-defense -- the agency was going to do the same to their entire city "experiment." Not that the experiment was particularly experimental, nor was it particularly based on how genetics actually works, though it was certainly eugenic as all heck. So here we get memory wipe as government control over a eugenic project and as self-defense against said government control.

We also see individual level decisions about memory elimination: Four brings a vial to the city with the plan of using it on one of his parents, who are leading opposing factions in what has become a civil war. He believes that if one of them will stop, so will the fighting as a whole (and then maybe the government won't memory wipe the entire city.) He gives his mother a choice instead of using this vial (he doesn't like memory wipes as an act of war/control/defense/greater good) and this winds up working. She agrees to leave the city.
Or Peter: He is cruel. He knows it. He wants to change. He knows people are the product of their experiences and choices to enough of an extent that he'd have a hard time doing this (and therefore just ... wouldn't) without the aid of wiping his memories. He wants to forget himself. Interestingly, he's the only individual-level memory wipe that we see go through. He forgets himself. In the epilogue, we find out that he's still not the nicest of people, but he's not the person he was before, either. He did make a (slightly) different self, and the difference matters. (Things like not stabbing rivals in the eye while they sleep are just slightly important.)

Four/Tobias, again. After Tris dies, he takes a truck and goes into the city with a vial of the memory serum. His friend Christina stops him, because "The person you became with her is worth being. If you swallow that serum, you'll never be able to find your way back to him." And with eliminating the memory entirely of who he had been and what he had done, I even think I might buy this argument. I will, however, note that this would be a complete elimination of memory. This isn't blunting the emotional impact, making a thing you can remember be less traumatic to recall. This is making the event gone, like it never was, instead of softer, so you can look at it instead of needing to bury it. 
And why do I read and understand the neuroethical arguments in dystopian science fiction?

Maybe it’s something you have to be Autistic to see, but all of their storytelling is 
Every writer is making a narrow and overly specified claim about
the nature of social pressure, taboo, deviance policing, human fulfillment, and
the methods by which a person located in a certain sociological position might resolve
     the needs inherent in their system.
When I read, this is what I examine. A writer’s inability to fully represent society
is simply a way of stating their warrants to me, and the individual scenes carry
not only emotional value, but grounds for the conclusions drawn in the depiction
of the change in the main character’s state. All of your fiction is an argument about a
     time and place. (Monje 29)

That's why.

(That's also from The Us Book, which I read and which you should read. Specifically, it's from "Reintroducing Art to the House of Rhetoric.")

Monday, February 13, 2017

Jewish Protest Thoughts

So. Bannon is anti-Semetic. We know that. Threats and vandalism on Jewish community centers and synagogues are up. We also know that. Jewish folks may not be the primary targets (I'm thinking Muslim people are the big-name target of the moment what with the travel ban that is definitely a Muslim ban let us be real, though there are seriously a lot of targets) but swastikas are on display. Which means Jews are on the list.

A thought I am having, therefore:
Drown out Nazi and Neo-Nazi slogans with clearly Jewish sounds:

  • On Tumblr I saw a suggestion of the Shehechiyanu. Which I am probably transliterating terribly, because Hebrew. It's a prayer thanking God for your making it to this moment, used on the first night of many holidays and at Bar/Bat/Bnai Mitzvot.
  • Songs for holidays of the genre "They tried to destroy us. They failed. Let's eat." I'm thinking Hannukkah and Purim, especially. Bring your gregors and drown out Trump and Bannon's names with those, to be especially Purim-like. Maybe give out Hamentashun?
  • Really any song that's in Hebrew or Yiddish that it makes sense to perform at full bellow. 
You see, doing slightly silly things that really piss off the bad guys while making us laugh is a way of (hopefully) keeping morale up. And singing about how some schmuck who tried to have us killed was swinging from the gallows he had built for us, and now we're going to eat pastries? I think that fits the bill. (And nosh some Hamentashen!)

Thursday, February 9, 2017

Legal protections and shaky ground

I have, I think, finally figured out why I felt less safe, not more, after turning in a formal accommodations letter for the first time this past summer. (That was nowhere near the first time I've had those same access needs I've got the letter for met at university. It was just the first time I had to turn in the letter.)

It's a pattern. When I just turned the letter in, without asking first if the professor cared about the letter, I didn't feel less safe after turning it in. (Note to self: Maybe stop asking, since some will care.) When I turned the letter in with a comment of "don't know if you need this or not, but here it is anyways" and I got a response in the area of "thanks but yeah, don't need it," I felt more safe than I had before turning the letter in. But it was the same amount of more safe that I've felt the times the answer has been that the professor doesn't care about the letter.

Which makes me suspect that the letter itself is less than relevant. My having the paperwork to prove I am entitled to "accommodations," as they like to call it when my access needs are met, that's not the issue. (Seriously, y'all aren't changing anything about the class structure when I use AAC, it's important and it's apparently unusual but I don't want to talk about my typing as something that you're accommodating me specially to allow.) My turning in said paperwork is also not the issue.

Depending on an often inaccessible, bureaucratic process that requires a probably-abled "expert" document that I really qualify for the diagnosis I'm claiming accommodations under in order to access my education and my work, on the other hand? That's an issue. Having said process done so it can back me up on the off chance I need it is useful. I'm glad those legal protections exist. They're important. They're good to have as backup. But I don't like relying on the backup any more than the next person. And I'd much rather have access happen because it's what should happen than because some paperwork says it legally has to happen. Or that some part of it legally has to happen -- my paperwork says I get text-to-speech, and that's actually my least-used AAC solution. 

Monday, February 6, 2017

In which I flip through my textbook and react to something

I'm taking a course on motor speech disorders this semester. (Was this a good life choice? We'll find out! Were my other classes this semester good life choices? Again, we'll find out!)

The text, for anyone wondering, is Motor Speech Disorders: Substrates, Differential Diagnosis, and Management, 3rd edition by Joseph R. Duffy.
"The decision to use AAC strategies is based on careful assessment of speech and communication abilities and needs, the prognosis, and the individual's potential to benefit from them." (387)
I guess?? I mean, I have to assume that's the way it's professionally done. In my experience, the decision to use an AAC strategy is made in the moment when speech isn't working right now and I need to do something. My first several decisions, the first several times I used it, were certainly immediate and uncareful need something now choices.

I'm in a Chinese language classroom in Tianjin, the teacher just asked me to speak, and I can't. I need to do something. I pull out my iPad (good thing I have it today!), open Notes, switch the keyboard to Simplified Chinese input, type something quickly, and hand it over to the student next to me, who reads it aloud.

I'm in measure theory on Yom Kippur (I fasted, but still went to class) and the professor asked me a question. (I don't remember now what the question was.) I can't speak. I don't have my computer or iPad with me. If I write in my notebook, it'll probably be mistaken for ignoring the question/continuing to take notes, because I was taking notes before and he doesn't know speech goes out on me yet. In any case, that's not likely to meet my immediate need. So I reach for a whiteboard marker and start writing on the side board.

I'm not waiting for someone to evaluate how much I can benefit from an AAC solution while I can't speak. I'm just ... not. That's not a thing. I'm getting into situations where I need something now, and I may or may not be grabbing the best solution. It hasn't carefully evaluated by an expert. I'm grabbing the first solution I can think of given my environment. My decision to acquire dedicated applications for AAC on my iPad and laptop was a bit slower and more considered. I didn't look into those options until I realized that speech giving out on me was going to be a regular thing (honestly had been a regular thing for some time, I'd just not communicated with language while speech was out before.) I asked around. There wasn't any sort of formal evaluation. (Though one might have been handy.) Has anyone expert looked at, well, any of my set-ups? Nope. That hasn't happened. Could they come up with something better as long as they recognized that I really do AAC? Probably.

I'm not certain if this is a commentary on how usually verbal and fluent-seeming autistic adults don't get the assessments for communication supports we could use, or if this is a commentary on gatekeeping where someone other than the disabled person is deciding whether or not to implement AAC. Maybe it's both.